LIFE IN THE END ZONE: A discussion of topical issues for anyone concerned with the final phase of life by Muriel R. Gillick, MD

February 22, 2006

The New Presidential Ethics Commission Report

You may never have heard of a national bioethics commission. At best, such commissions can perform a valuable synthetic function, summarizing the best current thinking on a controversial ethical topic. The 2 reports of the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, one on defining death and one on decisions to forgo life-sustaining treatment, did exactly that. As Alexander Morgan Capron comments in his article, “Governmental Bioethics Commissions: the Nature of the Beast,” (Lahey Clinic, Fall, 2002) these reports were successful because they “built a bridge connecting the legislative and executive branches, experts and academics in science, philosophy and law, and the general public,” resulting in the adoption of better policies. Regrettably, the current “President’s Council on Bioethics,” appointed by President George W. Bush and chaired by Dr. Leon Kass, has not served as a forum for public discussion of controversial issues, but rather as support for the president’s political agenda (for a discussion of how this problem could be remedied, see Arthur Caplan’s article, “Free the National Bioethics Commission”.)

The newest report, “Taking Care: Ethical Caregiving in Our Aging Society,” (September, 2005) has unfortunately adopted the ideological coloring of the executive branch. Taking Care is important in recognizing that one of the major challenges our society faces is how best to deal with the growing elderly population, many of whom will develop dementia. It makes the critical point that dementia in particular and frailty in general are unlikely to disappear any time soon. But the ideological driving force behind the report is the belief that euthanasia and assisted suicide are “antithetical to ethical caregiving” and “should always be opposed.” The report devotes one of its four chapters to a tirade against advance directives. The authors seem to think that the purpose of advance directives is to enable patients to decide, at the first sign of incipient frailty, to end their lives by forgoing life sustaining treatment. They envisage long lines of patients clamoring for physician assisted suicide. In fact, in Oregon, the one state where PAS is legal, a total of 33 people availed themselves of it in 2004, accounting for less than one-eighth of one percent of the deaths in that state. And advance directives, for all their flaws and limitations, have as their goal to enable prospective patients to avoid unwanted, burdensome, and often near-futile treatment near the end of life.

The report is also disturbing in its excessive focus on family caregivers. Having attacked individual autonomy as inadequate, Taking Care endorses family responsibility for the frail elderly. The relentless emphasis on individual responsibility that characterizes much of modern biomedical ethics may indeed be inadequate to address the situation of impaired elders. But surely a more communitarian vision warrants consideration—a society in which we build nursing homes and assisted living facilities that are truly resident-centered, rather than “total institutions,” a society in which we develop a system of health insurance that includes long term care and that provides excellent treatment for chronic as well as acute conditions, and in which we find ways to enable people to remain engaged and contributing citizens, even if they have problems with their hearing, their vision, their memory, or their walking. Taking Care seems to echo the party line that “family values” are paramount. Let us hope that this report receives the disregard it deserves.